That freaking Elf showed up again right on schedule. Abby was so excited to find him, it was very sweet. Even if I had to write a note back to her at midnight. Until day 2.
As we were driving to the bus stop my world changed. Continue reading
Today is Bridget’s birthday or as we say in our house her HAPPY DAY.
I know, just know, that my child would rather I not reveal this but….I do not want her to be me.
Continue reading
Words I never thought I would utter. But truly, I am thankful for the GAP. Ellen at Love that Max posted a picture on Facebook of the latest GAP add. Giving them a shout out for including a girl with cerebral palsy.
I had to blow up the add to the full-view to find her.
Today’s Throw-back Thursday post is actually a post from a Finish that Sentence Friday Prompt I answered on April 11, 2013. The prompt was: If I could live anywhere I would live…”
Here:
Time for Finish that Sentence Friday. And today’s snippet is….
“If I could live anywhere I’d live…”
Now I know you are expecting me to say a tropical island with a nice cabana boy who brings me wine at regular intervals…and yes that would be super cool (or warm, I guess). But if I could live anywhere?
I would live in Abby’s brain. Ew, gross you might be thinking? Really who would want to live in squishy brain matter….But I think it would be super cool.
I would be able to talk to fairies, sprites and nymphs (and I would also be able to figure out why they are different). I could look outside and see the fairy houses that were created overnight rather than looking at the leaves that have overtaken my flowerbeds. Instead of seeing a messy bedroom I would see a horse farm in one corner, a Barbie paradise in another and the oh so important stuffed animal corral on the top bunk. The only part of Abby world that Boo cannot be destructo baby in.
Then there is the man cave that Abby has taken over. The playhouse that is where the American Girl Dolls live and have high adventures. Under the pool table? That’s not a pool table MOM (exaggerated sigh) that is where Tinkerbell hid the leprechaun so we can get his gold (thank you Auntie Krafty K for that trap by the way). Oh and that dollhouse? That is where Periwinkle lives in the winter. She travels (who knew) between Allie’s room and the man cave dependent on the season.
I don’t have a summer home, let alone a winter home. Yet Abby’s fairies have vacation homes, condos and leprechauns who give them gold. Maybe I can start charging them rent!
Yes, it would be awesome, wicked awesome, to live in Abby’s brain. If just for a day.
Most importantly, my mind would not be concerned with magnets, every day math or math facts!
Today I am very thankful. So thankful I am participating in the Ten Things of Thankful hosted by Lizzi.
1. I am thankful for the friends who got what I was trying to say when I spewed venom earlier this week. That I would not trade Boo for the world but once in a while life becomes too much.
2. For Walt Disney & Company, I understand not one more parent wants to hear Let it Go but to see Boo’s face as she watched the Ice Show? Magic. Pure Magic.
3. For sisterly love.
4. That more people got the humor of Helicopter parent than were offended. Come on people lighten up, life is too short!
5. The I Run 4 group for their dedication and willingness to provide emotional support for families.
6. For M&M’s. Lame, maybe. But they are important to my state of mind. The fact that I can just eat three and provide amusement to others is an added bonus.
7. For older sisters willingly giving up their toys to their younger siblings.
8. For the friend that took Abby for a weekend of one-on-one attention.
9. For this video right here that shows Abby is not the only sibling who loves unconditionally.
10. And lastly, for this moment. This moment right here when Boo was a just a little girl in love with princesses and castles.
The fact that she just tells us to OME ERE and look at the castle and not really play with it doesn’t matter. That she just holds the three punsel (Rapunzel) Barbies stolen from her sister, meaningless. What I see here is a little girl who loves Princesses just like her older sister did. That she made Abby bring this up from the basement and place it just so in her room. That Boo WANTED this castle, relayed it to her sister and made it happen.
Some Milestones are different than others. This one is pretty freaking cool to me. That Abby grabbed my phone to capture it, amazing and so grateful my girl is so wonderful.
Both of them.
Some times….I hate this life. I hate that as much as I love Abby I fear those teenage years. I hate that one day she will go through a period of her life where we will not understand one another.
But I accept that.
I will not effing accept is that I HATE in capital and bold letters that doctors will never show concern for Bridget. That she has to have some mysterious swelling that one doctor tells me to call another doctor about who tells me to call yet another specialist about. That when I finally get her into the vascular clinic she is seen by one doctor and fourteen medical students/fellows and I am told that her vasomotor instability is not that big of a deal. “A LOT” of kids have something “like” this phenomenon and not to worry. When asked if I should be worried that it could be happening while she sleeps and is it fatal, I was told no. I told them they would be the first person I called should they be wrong.
No parent (and I am not looking for a poor Kerri thing here) should be told that. That without any testing, with a brief exam that their child is fine. Parents should not be made to feel like we are bothering doctors.
We are the reason they can afford their student loans, vacation homes and alimony bills.
Bridget has SIXTEEN different specialists. Why the freaking hell do I have to call them? They are all at the same flipping hospital. Can they not call one another and chat, is that too much to ask?
And why, dear God why, do they refer to one another and then disagree? Why must I always be the advocate, the voice of reason and the fingers of Google. Why do I have to always be vigilant? The one who e-mails and calls cardiology, genetics, rhuematology, neurology, GI, neuro-urology (yes, there is such a thing), pulmonology? Why do they think that because it is NOT life threatening it doesn’t impact her life?
Not that she “suffers”. There are children with disease, cancer and deformities that have a life so much more difficult. I completely get how lucky we are and how selfish I am for getting pissy that she has to endure things that really are not that bad in the scheme of things. Recently she got another quirk, not an ailment or symptom really. But just one more thing to add to her Booness. I said she already had 15 why add one more.
This was not the life I expected.
To constantly be second-guessing myself. And the Harvard Graduates.
To wonder if I push too hard or not enough.
To cry because children are supposed to be beings of joy before they are teenagers.
To be at my wits end because although I love Bridget for who she is I hate the fact that I don’t know why she is the way she is. That we need to know the why so we can give her the best life she deserves to live. Just like her sister.
To have to physically hold my child down for two hours while she screams during a test of her bladder function.
Because as much as I love my child sometimes I resent that she isn’t perfect. That she isn’t easy. That she, with all her advances, cannot keep up with where life has placed us.
Because I am not capable of being the perfect mom that can handle everything.
Because sometimes I cannot even handle my beautiful, awesome, perfect daughter.
And I am sorry. Because sometimes I effing resent it. I fucking hate that this is our life. A life where we know our beautiful daughter will always struggle. That our lives are scheduled around school, therapies, doctors appointments and not play dates, gymnastics and ballet.
We will struggle with Boo. For freaking ever. This will not end. That although our children are always our children Bridget will forever be our child and not the mother of our grandchildren.
That I look into Boo’s eyes and see how beautiful she is yet think if only….
The other night I had a PTA meeting (yes, I still haven’t quite escaped). I pulled into the driveway at 9:15 pm. As I walked up the house steps I noticed David was asleep on the love seat.
Abby was awake laying on the couch.
Me: Um…dear? Your bedtime is 8pm.
Abby: Well Daddy didn’t put me to bed.
Me: What were you watching?
Abby: Buying Hawaii, it’s actually pretty interesting.
Me: …….
Abby: I knew if I changed the station Daddy would wake up
I wasn’t quite sure if I should punish her (or her father) for staying up past her bedtime or admire that she was smart enough how to accomplish it.
Throw-back Thursday, this post was originally published on 10-OCT-2012. It’s about the time Abby became Boo’s advocate. For real. As in stand up for her sister to adults. This was probably one of the first times I realized that Abby was a warrior sister.
Boo had a tough week, so far. This weekend was wonderful, visiting my parents. The girls were spoiled for the short time we were there. Even though we were only gone for a couple of days, it was enough to mess with Boo.
To add to her difficult week, yesterday not only did she have to travel 3+ hours to Children’s for a GI check-up afterwards she had to take Abby to an orthodontist appointment. After spending 12+ hours in the car driving home from being spoiled, to spend 6+ (round trip) hours in the car then have to pick up Abby and just to sit in another waiting room for Abby was a bit much to ask of her.
While in the orthodontist waiting room, Boo was….shall we say….exuberant in her joy over a book of puppies. I don’t think the receptionist or the other families in the waiting room have ever experienced such exuberance. I was just happy that Boo was in the stroller (although I had a funny moment when I imagined their experience of an unconstrained Boo). Rather than being embarrassed I was so proud at how Boo was labeling the things in the book. Okay, I was embarrassed at the volume of her expression. But I was proud too 🙂
When it was time to leave, I asked if there happened to be a handicapped entrance/exit. Abby and I had to carry Boo’s stroller up 5 steps to enter the office building. The look of utter surprise from the receptionist face was priceless. Turns out, the building is not handicap accessible. Something that would not have occurred to me pre-Boo. Now we are lucky, I could have either carried Boo into the building or she could have walked. But that would have meant that Boo would be racing around the office (as would anyone after spending so much time in a car seat). So instead, Abby helped me get the stroller up and then down the stairs.
As Abby and I were carrying Boo’s stroller back down the stairs she commented on how Boo was so loud, she could hear her way in the back of the office. I asked if the doctor said anything about it, here is Abby’s reply:
They asked if the person making all that noise was Boo and I said yes. Then they said, wow she is really loud. I told them she was special needs–just deal with it.
Any embarrassment I may have felt faded in that moment. Abby is right, we have to deal with their building not being handicap friendly and they just have to deal too.
(Un)Diagnosed and still okay 